Lori Melichar is a director at the Robert Wood Johnson Foundation—the largest philanthropy in the United States dedicated solely to health and health care—where she focuses on discovering, exploring and learning from cutting edge ideas with the potential to help create a Culture of Health. She can be found on Twitter @lorimelichar.
Data about us—where we are, what we’re buying, what we’re reading—is being collected everyday, everywhere. Our cell phones, TVs, wearables, watches and even our Facebook feeds collect data about our daily lives. The Robert Wood Johnson Foundation (RWJF) is convinced this data also contains important insights into how we live, learn, work and play—and we think harnessing these insights could lead to major improvements in the health of all Americans.
Efforts to make sense of all this personal data and unlock the knowledge within are underway.
RWJF grantee Health Data Exploration Network has been bringing researchers and makers of health apps and devices together to explore the connections between community environments, individual behaviors and health. One such study enables RunKeeper participants to share their data with researchers who want to understand how the built environment relates to types and amounts of exercise over time.
Researchers at the University of Pennsylvania—another RWJF grantee—are exploring whether what people post online could give health care providers clues about their patient’s health. 3,000 people have agreed to give these researchers access to their electronic health records along with their Facebook, Instagram and Twitter data.
Using Apple’s ResearchKit platform, grantee Sage Bionetworks has been able to capture data on abilities affected by Parkinson’s Disease. Thousands of people completed tasks using their iPhones—from completing a speed tapping exercise on their phone’s touchscreen to measure dexterity, to using their phone’s microphone to record themselves saying “Aaaaah” to measure vocal characteristics—to generate that data. What’s more, over 10,000 of these individuals have agreed to share their data with researchers worldwide to help accelerate our understanding of Parkinson’s. Encouraged by this incredible response, we recently launched the Mood Challenge, seeking proposals from researchers who want to use ResearchKit to further the understanding of mood and how it relates to daily life. And soon, Android users will also be able to participate in mobile health studies thanks to ResearchStack.
The question of privacy has been central to all of these data sharing efforts—and it’s a big one. To get people to share their data, they need to feel comfortable doing so. What we’ve learned is that we can gain that comfort and trust by designing studies in ways that allow people to choose how to share their data and with whom. We have been excited to see that so many people are willing to donate their data for the public good. And we are hopeful that this number will grow. To us, that demonstrates a real shared value around health.
Now, with all this personal health data at our fingertips, we have a responsibility to make that data actionable—to share back meaningful information with citizens, providers, and policy makers so they can make choices that support the health of their families, their communities, and themselves. While progress has been made, there are still hurdles to overcome and still so much work to do to maximize the impact of this shared data.
For data to be actionable, it needs to be relevant and representative of healthy people and those who are ill, and needs to represent all facets of the American population, not just those who regularly visit their provider or purchased a smart watch. It also needs to be inclusive of data about the social determinants of health. We are concerned that research and applications built using data that is only representative of a certain subset of the population will produce solutions that only help those communities.
Actionable data doesn’t always need to be quantitative. We also need to understand how emotions and qualitative information can be incorporated into data-driven efforts to improve health and well-being. We note with interest the work of MyCounterpane, who is working with individuals and caregivers living with Multiple Sclerosis to collect emotions as a way to understand the impact of the disease beyond the physical effects. Grantee Atlas of Caregiving is using wearable cameras and sensors to understand how caregivers spend their time, how stress plays into caregiving, and which activities are most stressful. Importantly, they also measure moments of joy and happiness.
How can you help? If you have a cutting-edge idea for how to improve learning from health data, consider joining the Health Data Exploration network or submitting a proposal to the Foundation. Finally, find me on Twitter and keep the conversation going. I’d love to hear from you.